Oh dear, that’s rubbish isn’t it. You are in the darkest place at the moment, waiting for results and feeling like you have the sword of Damocles hanging over your head. The Waiting Room is horrible, and not knowing is utter torture. We all know what you’re going through, though that doesn’t make it any easier for you, so here are a few things you might want to think about.
I suspect you have very little clue about this breast cancer stuff. A good place to start is the Publications part of this site, particularly the early bits, where it lists some of the different conditions you might have, as not everything that is looked at in the breast clinics turns out to be cancer, and it also lists the different types (there are about 15 different types!) of breast cancer. The most common type is invasive ductal carcinoma, or IDC. Some cancers are stimulated by hormones - Oestrogen (often written on here as Er+ if that’s the case) and Progesterone (Pr+). Some are also stimulated by a growth factor, you may see people writing about being HER2+.
YOU MIGHT NOT NEED TO ASK ANY QUESTIONS AT ALL, and of course we’re hoping that is the case, but if you do, I suggest the following list of questions. You’ll probably be told all of this without needing to ask, but probably not a bad idea to have the list to hand anyway. Write your questions out with a bit of space in between to write the answers, I got a little notebook, 1/4 the size of A4, and wrote one question on each page, so there was space to write down what you are told. Writing the answers down as you’re being told can be helpful in pacing the meeting too, to give you time to absorb what you’re being told.
What type is it?
(There are lots of different types)
What grade is it?
(Grade 1 = cells not very different from normal cells so generally slow growing, Grade 2 = medium, Grade 3 = most different from normal cells so generally faster growing. If it’s a type called DCIS, which is a kind of pre-cancer, it’s not given grades but is low, medium or high.)
What size is it?
(Some are tiny, just a matter of millimetres, others can be very wide spread through the breast and measured in centimetres. Size affects what they decide as the treatment plan.)
Is it hormone receptive, and if so, what are the scores?
(They’ll be expressed as scores out of 8, you’ll see on this site people talking about being 6/8 or 8/8. If it is hormone receptive, they can use hormone therapy to help treat it or prevent recurrence.)
Is it HER2 receptive?
(If it is, they can prescribe Herceptin. Around 25% of tumours are HER2 receptive. Herceptin is usually prescribed with or after a course of chemotherapy.)
Does it look like it’s spread to the nodes?
(These are a “safety net”, so even if it is in the nodes that doesn’t mean you have secondaries, it’s just that the nodes are doing their job in catching any cancer cells that are trying to spread. If it has, it is very likely you’ll need chemotherapy.)
What is the treatment plan?
This is the most wide-ranging question, because treatments can include some or all of a range of treatments - surgery, from lumpectomy (called Wide Local Excision or WLE) to mastectomy, with or without immediate reconstruction; chemotherapy, and there are lots of different regimes that different oncologists choose to use, depending on what exactly they’re dealing with; hormone therapy, which could be Tamoxifen for pre-menopausal women or either Tamoxifen or drugs called aromatase inhibitors (AIs) for post-menopausal women; radiotherapy; and the order of treatments differs depending on what they’re dealing with.
It’s such a confusing time, I don’t want to overload you. Take a read through the leaflets I suggested (someone will be along shortly from BCC to point you at them, I’m sure). There are also other suggestions for what to do.
DON’T GOOGLE. There are lots of very scary sites out there, so stick to the reputable ones, like this one, Macmillan and the like. Ignore sites that are designed to separate frightened people from their money.
Don’t be in a rush to tell everyone. Take your time, come Monday there might not be anything to tell!
Try to bring someone with you to the appointment if you think you need that extra support. You could even give them your notebook and get them to write things down for you - if the news is bad you might not be able to take it in.
If you’re really struggling, get an emergency appointment with your GP who might be able to prescribe you a couple of sleeping tablets to help you sleep at nights between now and Monday. Several people have found them really helpful for dealing with The Waiting Room.
Browse round the forums if you want to, and ask any questions you think of. Very few of us knew anything about cancer before we were hit with it ourselves, so we’ll try to help, or point you in the right direction.
If you want to speak to an understanding and knowledgeable human voice rather than just typing, give the helpline a ring. It’s staffed by people who will not judge, but are a sympathetic ear. It doesn’t matter if you just blub down the phone, they’ve heard it all before.
THERE IS NO SUCH THING AS A SILLY QUESTION.
I’m sure there are other things I found useful but I can’t remember them all. Others will be along with some suggestions, I’m sure.
You might not need any of what I’ve suggested above, I really hope that’s the case. Please let us know how you get on on Monday, and in the meantime have a virtual hug. (And by the time I’ve finished this BOOK I’m sure others will have replied!)
CM
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